Your Guide to Systemic Lupus Erythematosus
16 Articles
A strange tingling in your hands. A burning sensation in your feet. Weakness that makes everyday tasks unexpectedly difficult. For people with lupus, these symptoms may be signs of lupus neuropathy — nerve damage that can affect how you feel, how you move, or both.
Neuropathy isn’t one of the most common complications of lupus, but one large study found that peripheral nervous system problems affected about 7 percent to 8 percent of people with lupus. Recognizing the signs early and finding the cause can help guide treatment and reduce the risk of lasting nerve problems.
Here’s what causes lupus neuropathy, how it can show up, and how doctors diagnose and treat it.
Lupus neuropathy happens when the immune system, which is already attacking the body’s own tissues, also damages the nerves. This can happen in several ways, including inflammation of the small blood vessels that supply nerves, immune system proteins that mistakenly target nerve tissue, or other inflammatory processes.
Nerves depend on tiny blood vessels for oxygen and nutrients. In lupus, inflammation can damage these vessels, a process called vasculitis, reducing blood flow to the nerves. Symptoms of some peripheral neuropathies often begin in the feet and hands and may gradually spread upward.
The immune system can also contribute to nerve damage through antibodies and other immune proteins. In some cases, clumps of these proteins, called immune complexes, may contribute to inflammation and tissue injury.
Nerve problems are more likely to occur when lupus is active, although neuropathy can also develop when other lupus symptoms appear to be under control. Because different mechanisms can affect different parts of the nervous system, lupus neuropathy can look very different from one person to another.
Lupus neuropathy can show up in different ways, depending on which nerves are affected.
Doctors generally group it into several main types:
Research in people with lupus suggests that sensory neuropathy is one of the most commonly reported types of peripheral nerve problems. Mononeuropathy and cranial neuropathy are also reported relatively often.
Symptoms depend on which nerves are affected. You may notice numbness, tingling, burning, or an electric-shock-like sensation. Pain and muscle weakness can occur as well.
Symptoms may affect the hands and feet or other parts of the body, including the face, and they don’t necessarily occur equally on both sides.
The outcome varies by type and severity. Some lupus-related nerve problems improve when the underlying inflammation is treated, particularly when the neuropathy is linked to active lupus. Others may persist or require treatment specifically directed at the nerve symptoms.
Because nerve symptoms can have many causes — including conditions unrelated to lupus — new or worsening numbness, tingling, weakness, or other nerve symptoms deserve attention. Identifying the type and cause of the nerve problem is an important first step in choosing the right treatment.
Diagnosis begins with a thorough evaluation to identify the pattern of nerve symptoms and determine whether they stem from lupus or another condition.
Before determining that lupus is the cause, doctors look for more common explanations. Diabetes, certain medications, nutritional deficiencies (such as vitamin B12 deficiency), infections, and thyroid dysfunction can all cause similar symptoms.
Blood tests, including tests for lupus-related antibodies and complement levels, can help assess lupus activity, although no single blood test can definitively prove that lupus caused the nerve damage.
Next, specialized tests assess how well your nerves and muscles are functioning:
A neurologist typically performs or interprets these tests, often working closely with your rheumatologist to pinpoint the exact type of nerve involvement.
Sometimes NCS and EMG results are normal even when you have clear nerve symptoms. This frequently happens with small-fiber neuropathy, which affects tiny nerve endings that standard electrical tests cannot detect. In these cases, doctors may use quantitative sensory testing (which measures how you perceive various sensations like pain, touch, temperature, and vibration) or a small skin biopsy to measure nerve fiber density.
Getting the cause right matters because treatment depends on it. Neuropathy caused by a metabolic issue or vitamin deficiency requires an entirely different approach than nerve damage driven by lupus-related inflammation.
Treatment depends on what is causing the nerve problem, which nerves are affected, and how severe the symptoms are. When lupus-related inflammation is damaging the nerves, treatment focuses on controlling that inflammation while also managing symptoms such as nerve pain.
For many people with lupus, hydroxychloroquine (Plaquenil) is a foundation of treatment. When lupus is causing significant nerve inflammation, doctors may add medicines that more strongly suppress the immune system.
Depending on the situation, treatments may include corticosteroids, azathioprine (Imuran), mycophenolate mofetil (CellCept), cyclophosphamide, or rituximab (Rituxan).
Some forms of nerve damage, particularly mononeuritis multiplex, can be serious and progress quickly. When doctors believe the neuropathy is caused by active lupus inflammation, they may use high-dose corticosteroids along with a stronger immunosuppressive medicine.
Doctors may also treat the nerve symptoms themselves, especially pain. Options include medicines commonly used for nerve pain, such as gabapentin (Neurontin) or pregabalin (Lyrica). Certain antidepressants, including duloxetine (Cymbalta), can also help relieve nerve pain.
Topical treatments, which are applied to the skin, such as lidocaine (Aspercreme), may help with pain in a specific area. Finding the right treatment can take some trial and error, so let your doctor know if your symptoms aren’t improving or if side effects are interfering with daily life.
Physical therapy can help maintain strength, mobility, and balance. Occupational therapy may be useful when weakness or sensory changes make everyday activities more difficult. These therapies can also help you adapt to any nerve problems that persist after the underlying inflammation is treated.
Not all nerve damage can be reversed, especially when nerve fibers have been significantly injured. Treating active lupus promptly and addressing nerve symptoms can help limit further damage and improve comfort and function.
Lupus neuropathy can feel unsettling. When you notice new tingling, numbness, or weakness, it can be hard to know whether it’s something to watch or something that needs attention.
The reassuring part is that lupus-related nerve problems are recognized complications of the disease, and treatment options are available. Many people experience improvement when the underlying cause is identified and treated.
If you notice new nerve symptoms, keep a simple log. Write down when the numbness, tingling, pain, or weakness occurs, where you feel it, how long it lasts, and whether anything seems to trigger or relieve it. This information can help your doctor identify patterns and decide which tests may be useful.
If symptoms are severe, appear suddenly, or worsen quickly, contact your doctor promptly rather than waiting for your next scheduled appointment.
Nerve symptoms can have many causes and may not be caused by lupus itself. Sharing changes early can help your care team determine what’s happening and decide on the next steps.
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Your Guide to Systemic Lupus Erythematosus
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